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‘Drugs are too expensive for the NHS – and people are paying with their lives’

Don’t blame the NHS for denying vital medication, say members of a new activist group, Just Treatment. Blame the pharma companies hooked on huge profits

Arms aloft, activist and breast cancer patient Emma Robertson emerged from the UK headquarters of pharmaceutical giant Pfizer last month wearing a bright blue T-shirt. Emblazoned on the back in bold yellow letters were the words: “No drug should ever cost a life”.

Thirty minutes earlier she had snatched a pen from my hands. “I can’t believe I nearly forgot to sign my own petition,” she exclaimed, hastily adding her name to close on 20,000 others demanding that Pfizer drop the price of a breakthrough breast cancer treatment which around 5,500 NHS patients had been denied. In February, the drug palbociclibhad been rejected by the National Institute for Health and Care Excellence (Nice) for use on the NHS in England due to its hefty price tag, estimated at around £140 a pill.

The victory was the climax of Robertson’s first campaign with a new activist group, Just Treatment. Founded just under a year ago, the group has recruited nine patient leaders who have all struggled to get the treatment they desperately needed on the NHS. They receive training and support to spearhead campaigns with funding from philanthropist George Soros’s Open Society Foundations. Forty core members are helped by more than 20,000 supporters who write to politicians and companies, sign petitions and protest.

“Too many activist groups just apply pressure on Nice and the NHS to cough up the money for expensive treatments,” says Robertson. Instead, she wants the pressure put on the drug companies setting the high prices. “As a patient, obviously I want – and need – the NHS to fund palbociclib, but as a citizen I know there isn’t some magic money tree. We live in a society with limited resources, which means not everyone can get everything they need. Patients rightly demand access, but rather than putting more pressure on where resources are allocated, we should be looking at root causes, like why the drugs are so expensive in the first place.”

We need to ensure the pressure is on the drug companies who set the prices as well as the system that allows them to do so

Robertson insists that if the price was dropped to a pound a pill, palbociclib would be more in line with what it may actually cost to produce – and would still allow for profit.

Just Treatment wants to have full transparency of the drug industry to reveal how much public and private investment was made in the development of a medicine, how much drug companies spend on marketing and sales, full disclosure of all trial evidence, and full openness on the prices being charged.

“The success of Emma’s petition shows just how angry and engaged the public are when it comes to the NHS and access to drugs, and how willing they are to support causes like this,” says Just Treatment’s co-founder and lead organiser, Diarmaid McDonald. For many years, he campaigned for more equitable access to antiretroviral drugs to combat HIV. “I’d seen that fight and the incredible successes in developing countries for people securing vital access to medicines,” he says. “Increasingly, back in the UK, I began seeing many of the same issues of not being able to access drugs because of high price tags. A fight needed to be had at home as well as abroad. It’s important that the pressure is applied in the right place: on the companies who set the prices.”

Many of Just Treatment’s patient leaders have records as activists in their own right. Mel Kennedy, 40, fought for the life-extending cancer drug Kadcyla to be provided on the NHS in Northern Ireland. Kennedy had to crowdfund, raising £26,000 to spend on treatment privately, until in June Nice reversed their its decision and approved the drug for use in Northern Ireland. After Simon Brasch, 51, received his surprise diagnosis of hepatitis C two years ago – something he attributes to an earlier blood transfusion – he had to wait over a year to get the medication he needed. Even though the drugs were approved for use on the NHS, their cost meant they were strictly rationed. Brasch, who lives in London, didn’t make the cut. “My doctors and I were in a perpetual state of not knowing. It was just a case of waiting until my liver was ‘bad enough’ to put me over that threshold for treatment.”

Brasch feels strongly that in situations like this the UK government should simply overturn the patent on the drug. Patents grant their holders a temporary monopoly on producing the drug, effectively allowing them to set prices as they see fit. Overturning these would allow other companies to make cheap generic copies that the NHS could afford without having to ration access. He points to India and Italy, whose governments have taken on big pharma and won, justifying such measures as necessary to safeguard the health of their populations. “If companies cannot offer fair prices then we should take action to compel them to do so,” he says.

Under the crown use provisions of the 1977 Patents Act, the government can legally override a patent and provide a compulsory licence so long as it provides adequate compensation to the holder. But there’s the rub: this could cost billions of pounds. But such measures are unlikely to gain traction in the UK. The political costs are high, and would involve going against incredibly powerful forces. “It’s just like tobacco or alcohol, or guns in the US,” says Brasch. “You’re going up against one of the most profitable industries in the world.”

Clare Groves, 49, who had to wait nearly three years for hepatitis C treatment in London, is frustrated at how difficult things can be even if you are well informed. “There was so much to and fro between specialists. Nice said the drug I needed should be provided to all, but then there were strict quotas in place,” she says. It’s this point that Just Treatment really want to hammer home. “The fault lies with the drug companies charging unjustifiably high prices. We need to ensure the pressure is on the drug companies who set the prices as well as the system that allows them to do so,” says McDonald. The pharmaceutical industry argues that it costs as much as $2.6bn to develop and market a new drug – and without high prices, companies would be unable, or unwilling, to keep the pipeline of new drugs flowing. But since 2016, the UK Competition and Markets Authority has fined a number of drugs companies for unfair pricing of medicines.

The prices the NHS pays for individual drugs are often kept secret, and it’s difficult to find out how much is spent on research and development. But the total NHS drugs bills was £17.4bn in the year to April 2017 – up 34% since 2010. In the US, a 2015 investigation foundthat nine out of 10 big pharmaceutical companies spent more on marketing than on research. The industry also relies heavily on publicly funded research. A recent study by Global Justice Now and Stop Aids found the NHS had spent £1bn on medicines last year alone developed by drug companies but with substantial assistance from the public purse. Although Just Treatment is pleased about the success of its first campaign, McDonald says serious questions need to be asked about how much we are paying for drugs. “We don’t know what we’re paying, but we do know that it’s almost certainly over the odds.”

After Pfizer lowered the price for palbociclib last month, Craig Eagle, head of oncology at Pfizer UK, said: “We must acknowledge that there are still challenges in bringing new cancer medicines to patients in the UK. Cancer medicines are becoming more advanced and complex. We need to continue working in partnership with Nice, NHS England and the government to ensure the system is able to keep pace with medical innovation so patients can access the medicines they need. This is important if the UK is to achieve its ambition of world class cancer outcomes.”

So what are the battles ahead? Just Treatment will continue to fight for cheaper cancer drugs, as well as turning its attention to others with “eye wateringly high prices”, including treatments for hepatitis C, Addison’s disease, and cystic fibrosis. As Robertson says: “It’s not going to be easy, but there’s really no excuse to not be looking for other ways to do things. How we fund and pay for drugs now is not working for anybody. Until we do, people will keep paying with their lives.”

An NHS England spokesman responds: “As the NHS goes into the most financially challenging few years in its history, responsible pharma companies understand they too need to play their part. We’re already striking innovative deals that enable us to widen access to medicines for patients while driving maximum value for taxpayers.”

This article was amended on 20 December 2017 to correct the spelling of Simon Brasch’s last name from Bransch.

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